A NEW TREATMENT REGIMEN

When I got back from Greece I had a meeting with a doctor at the Marsden. Once again it was someone I hadn't met before, but this time she was a consultant and instead of just feeding back the decision of the team (which was what mostly happened before) we had much more of a dialogue, which was great. She told me that the team had spent a long time thinking about and discussing my case, which was very reassuring - the disadvantage of any large hospital system is that it's harder to feel seen, let alone cared about, as an individual, so it was good to know that they do assess each case attentively.

I'd been told last year that there were no other chemo drugs suitable for my condition, so I'd braced myself to hear that there was no more treatment they could offer. All drug treatments, even once cancer has spread, are based on the organ where the original cancer cells are from, so the problem with cancer of unknown primary is that there's a degree of guesswork in finding the right drugs - and as it's a pretty rare condition there aren't many research trials to draw on. So it was a huge relief to hear that they've come up with a new combination of 2 drugs which target the whole upper gastro-intestinal system (liver, gall bladder, bile duct, pancreas etc.), and which therefore have a reasonable chance of being effective wherever my primary tumour is / was. 

It will be systemic chemo (i.e. given intravenously), like I had from December 2010 to June 2011. The chemoembolisations I had in Germany target a specific tumour, which is why the side-effects are fewer, but you can only treat one area at a time, so now, as I've now got several areas of growth (all in the liver still), that's no longer an appropriate intervention. Also, while cancer is growing there's a risk of micrometastases (migrating cancer cells) in the bloodstream, which is how it spreads from one organ to another, so I now need chemotherapy which will go through the bloodstream as well as the liver to try and eliminate or control that. The doctor explained their rationale very clearly, answering all my questions, and it makes perfect sense to me. 

So, after consulting with Dr Herzog and confirming that he's in favour of this too, I've cancelled my planned trip to Germany (I was due to go this week), and instead I'll start chemo at the Marsden next week. Previously I would have been sad to lose contact with the clinic and miss out on the support from other patients, but I'd found the travelling and disruption to my life was becoming more and more wearying, and I've now established a group of close friends from the clinic who I keep in email and phone contact with, so I feel well supported. Also, as I posted in July, I was already looking into alternatives, so I feel very ready for a change of rhythm. (I'll keep Dr Herzog updated though and would certainly consider going back again in the future if it seemed appropriate.)

I'll be on a combination of Capecitabine, which is taken in tablet form for 14 days on, 7 days off, and Oxaliplatin, which will be given intravenously once every 3 weeks. The plan is to do 4 cycles (providing I tolerate it OK), and then do a scan and review how things are going. This combination is apparently usually fairly well tolerated, but as with all chemo drugs there are a number of possible side-effects - some a nuisance, and some potentially very serious. To my relief I won't lose all my hair, but as with the previous drugs, thinning of the hair is possible. It was horrible having my hair falling out and becoming really thin last spring, and now that it's all grown back to its previous thickness and health, I'd be gutted to lose it again. But I'll have to wait and see. 

There can also be some neurological side-effects which cause tingling, pain or numbness in the fingers and feet. This is triggered by exposure to cold, so you have to use gloves to take things out of the fridge, and wrap up warmly in cold weather. Usually this peripheral neuropathy, as it's called, is temporary and stops after the end of treatment, but it can cause irreversible damage to the nerve endings. That would put an end to my violin-playing days, so I'm certainly going to be very careful (they'll also monitor me closely).

More rarely, there's a risk that the windpipe can go into spasm and make you temporarily unable to breathe or swallow - again, this is triggered by cold, so you have to avoid eating or drinking anything chilled. I'll have to become very organised and take things out of the fridge an hour or two before I need them so that they have time to reach room temperature - I'm sure it will be manageable, but will take a bit of adjusting to.

So although I'm very relieved that this is available, I was initially quite scared about starting full-on chemo again, with the unknowns of how it'll affect me (and whether it'll work). I haven't asked but I'm pretty sure the sensitivity to cold will rule out going skiing (even if I feel up to it - nausea, diarrhoea and fatigue are other common side-effects), and I've felt pretty gutted about that: after a year of feeling relatively well it's tough to face the limitations this regimen will impose, and accepting that I'll have to take things easy. 

However, after a week or so of worrying about how it's going to be, and feeling upset about all the things which could go wrong or be distressing, I've realised that I need to just take things a day at a time. It's not always easy to do, but I'm doing my best to focus on where I am right now, and deal with things when and as they come up rather than worry about them in advance. It feels more important than ever to enjoy things whenever possible, and alongside the bleaker stuff I've had some really nice times (including a friend's wedding, some Proms, and a lovely Bank Holiday weekend in Edinburgh with my friend Amy). 

So I'm in a much better headspace than I was, and now I'm keen to get started. I'll post again once the new regimen's underway to let you know how it's going!